Defying Gravity
By Melissa Deal
A few weeks ago (though it seems like a life time already) I had the opportunity to travel to New York City with some family members for a “girls’ day out.” Now for many of us in the autism community, a day away from home was a truly remarkable event itself. I, like many of you, rarely ever leave my little guy. In fact, I realized as I prepared for this trip it was the first time in the four and a half years since he’s been diagnosed that I would be leaving him overnight for something that wasn’t an autism conference or work related. But my husband was going to be taking care of him, so I felt confident in being away from him for a much needed break.
The main focus of our day trip was a visit to the Gershwin Theatre to see “Wicked.” Now for those of you not familiar with Broadway – this one is a showstopper. This musical has beautiful songs, amazing effects and the ability to help escape from one’s life – if only briefly. Ever since I first heard the “Wicked” soundtrack a year or so ago, the lyrics from one of the songs have made me think of our plight here in the “Land of Autism,” but I’ll come back to that in a moment.
The heroine of the story Elphaba, is the much maligned “Wicked Witch of the West” from the original “Wizard of Oz.” In this story, you may actually grow to love her character – I know I have. “Wicked” [Book by Winnie Holzman] tells the story of her life before Dorothy showed up. What also struck me was the character of “The Wizard” – the all-knowing, powerful Oz and how he reminds me of some doctors and officials in the CDC, especially the ones we keep seeing in the media. Never question the wizard no, never! He has a vile henchwoman named Madame Morrible, his “press secretary.” I bet some of you can think of a few women in the media we have seen touting the “it can’t possibly be vaccines” mantra that fit that bill.
What strikes me about the Wizard and Madama Morrible is that when they realize that Elphaba is willing to stand up for what she believes in and can’t be controlled, then she must be silenced and vilified. Madame Morrible announces to the citizens of Oz, “There is an enemy that must be found and captured! Believe nothing she says. She's evil” [Holzman]. Hmmm, sounds a little like what happens to people who have the audacity to question the safety and efficacy of vaccines and what they are doing to the overall health of our children.
Now, I’m a “by-the-book” kind of girl – always have been. I always follow the rules. I don’t know about you, but I spent the first year of my son’s life doing everything exactly like the pediatricians and baby books said to – all his vaccines on time, antibiotics for his ear infections. I never questioned if it was the “best” or “right” thing to do for my child. They were “Doctors” and don’t they know what is best? But all that changed when he was diagnosed with autism at 19 months. I find myself singing these lines and realizing how truly appropriate they are to my life. Because… (with apologies to Stephen Schwartz for omitting some of his amazing verses):
“Something has changed within me
Something is not the same
I'm through with playing by the rules
Of someone else's game
Too late for second-guessing
Too late to go back to sleep
It's time to trust my instincts
Close my eyes: and leap!” [Stephen Schwartz. Wicked. Decca Broadway. 2003.]
If you would have told me five years ago that I would be doing tons of internet research, calling legislators to advocate for change, e-mailing friends and family information that may one day save their child and family from a life of heartache and misery (even if some of them think I am crazy!) and helping other parents who have a child newly diagnosed on the spectrum (since I’m a “veteran”), I would have said “Oh no, that’s not me.”
Elphaba sings:
“I'm through accepting limits
'Cuz someone says they're so
Some things I cannot change
But till I try, I'll never know!”
One of my favorite graphics on an AoA story was “Think for yourself – Question Authority.” So that is what I, like many of you have become; someone who reads voraciously, someone who questions and thinks for myself now, rather than just taking what the medical community and government are handing us.
“Together we're unlimited
Together we'll be the greatest team
There's ever been”
We might not succeed right away, but we MUST try. No parent should have to watch their healthy, happy baby plunge into the abyss of autism. And no individual child should be made to suffer for the greater good. Ever.
Elphaba’s anthem resonates with me and maybe it will with you, too. Just remember,
“And nobody in all of Oz,
No Wizard that there is or was
Is ever gonna bring me down!”
So keep up the good fight for your child (or grandchild) and all of the children with autism. May we soon stop adding them to the ranks by the thousands. Hopefully, a revolution will come soon, but if not we must keep working to educate those around us. We must keep trying to “Defy Gravity.”
And if you ever get the chance to go to NYC or if a touring production comes to your town, go see "Wicked." Because if you are reading this on AoA then I bet you can relate to Elphaba and you certainly deserve the “chance to fly.”
Melissa Deal is the mother of a six and a half year old son with autism. She previously worked part-time as a University instructor in Communications. She co-facilitates an autism support group in her county.
Beautiful piece, Wicked is a powerful play to see, you cannot listen to For Good without getting choked up...more lyrics that hit home for all of us.....
(Elphaba):
I'm limited
Just look at me - I'm limited
And just look at you
You can do all I couldn't do, Glinda
So now it's up to you
For both of us - now it's up to you...
(Glinda):
I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you...
Posted by: Val | August 04, 2009 at 08:03 AM
Dear Melissa,
I was thrilled to read your publication! It was outstanding. It warms my heart that someone like you is on the "frontlines" of being an active advocate for people & families dealing with autism. Thank God. Also your parents are amazing in their support. Keep up the good work & God bless.
Nurse Norma
Posted by: Norma snyder | August 02, 2009 at 02:07 PM
How close-minded I was to the truth before autism. It's been a horrible price to pay, but has taught me to see the light.
Posted by: Crystal | July 31, 2009 at 12:07 PM
"The truth is less about fact or reason
And more about what people believe in.
And right now they think I am wonderful."
Made me think of the average American and the vaccine safety issue. We had to look behind the curtain. Wicked.
Posted by: Doreen Carlson | July 27, 2009 at 11:37 PM
Now I must rush out and buy the soundtrack. The original book was written by Gregory Maguire, by the way, and I loved it long before there was a musical. And now, to quote another book, this time a children's book from the "Lemony Snicket" series, and in reference to reading everything we can get our hands on in regard to autism and autism research:
“Wicked people never have time for reading. It’s one of the reasons for their wickedness.” Dewey Denouement _The Penultimate Peril_
The quote above is the sig file in my email; which I shamelessly stole from a librarian.
Posted by: Sue | July 27, 2009 at 05:39 PM
Some of my other Broadway reviews were along the lines of "why did the main girl have to sing so loudly" and "the seats were too small" but Wicked was amazing. Far and away the best music and the best story of any show we ever saw.
It seemed like a lifetime ago we saw it, but I'll have to break out the CD and listen to it in a whole new light now.
And if I remember right, didn't Elphaba first fall out of favor with the government because of her concern over the animals losing the ability to speak and didn't she wonder why no one else noticed or cared? Sounds about right.
Posted by: Jack R. | July 27, 2009 at 03:24 PM
It is posts like this that gives me the ability to take my cynicism down a notch. And I need that in order to stay sane. Well, as sane as the mind will allow me to be; knowing everything I know and not understanding why the rest of the population doesn't know it.
Posted by: Deborah (www.debstake.wordpress.com) | July 27, 2009 at 09:42 AM
Perhaps Mr. Cole could facilitate a collaboration of sorts between Mr. Schwartz and Ms. Deal. Certainly the autism community offers a wealth of creative raw material, particularly in the ethical intricacies surrounding damage paradoxically done by agencies whose mission is to improve public health.
Minnesota has its own Madame Morrible, who furtively darts about at public functions running interference for the state department of health, doing her utmost to discredit parents of vaccine-injured children. Our taxes pay her salary.
Posted by: nhokkanen | July 26, 2009 at 02:51 PM
Bravo! The musical "Wicked" also struck me with emotion and inspiration as a new rebel against the CDC. Before "Wicked," we all presumed in Oz that the pretty fairy was good, and the wicked witch was bad. This musical shows us how propaganda led us to those conclusions, and not actual fact checking and research. Likewise with vaccines, we have been indoctrinated, not educated. My son is recovering from vaccine induced autism, because I chose to defy gravity with an unpopular approach in our media and government: biomedical treatment.
To the undecided parents, please do your homework on vaccines. Start with the swine flu vaccine (google: 1979 swine flu vaccine injuries) which will be TESTED on children in schools in Oct. '09 with no safety trials. This will also contradict what few safeguard protocols we do have in place for vaccines like informed, parental consent. Make the CDC earn your trust, instead of blindly following the herd where 1 in 150 will be diagnosed with autism.
www.moosemoms.blogspot.com
Posted by: Pam | July 26, 2009 at 02:18 PM
I love Stephen Schwartz's music/lyrics, enjoy a good musical, can really appreciate the analogy, and think its grand he will be contactin you Melissa. Get his ear and heart with your story and perhaps you both can dance with it. Thanks for a great article.
Posted by: Gale | July 26, 2009 at 12:27 PM
Dear Michael,
Thanks for your note. Like Melissa, I found Wicked both inspiring and resonant. We've seen the play three times. The connection to the autism nightmare has struck me every time. Defying Gravity is a masterpiece. Please send our best to Stephen Schwartz and thanks for reading Age of Autism.
Posted by: Mark Blaxill | July 26, 2009 at 12:06 PM
I remember one time my husband and I went to a wedding in Ireland and I kept telling people that I hadn't been away with John for 10 years. The look on peoples faces!! John later said to me "Stop telling people as they don't really understand and it's becoming boring" I agreed LOL!!
Posted by: Joan Campbell | July 26, 2009 at 12:05 PM
Dear Melissa: Your article found it's way to my browser by way of a Google Alert and I shared it with Stephen Schwartz (I am his assistant) as I knew he would appreciate it. He would like to send you a note - can you send me your email address? Mine is [email protected]. Thank you so much and thank you for the well-written article and the plug for WICKED. Best, Michael
www.stephenschwartz.com
Posted by: Michael Cole | July 26, 2009 at 11:10 AM
Melissa,
Your post really hit home with me. Wicked is one of my favorites and I can never listen to "Defying Gravity" without tearing up. Whenever I'm feeling beaten down, I listen to it in my car and sing the lyrics at the top of my lungs (with the windows closed!) and it strengthens my resolve. Another song that resonates is "Wonderful". I think of the Wizard as the CDC and AAP:
"A man's called a traitor--or liberator
A rich man's a thief--or philanthropist
Is one a crusader--or ruthless invader
It's all in which label
Is able to persist.
There are precious few at ease
With moral ambiguities
So we act as though they don't exist."
Pretty astute, that Stephen Schwartz!
Posted by: Cindy Keenan | July 26, 2009 at 08:51 AM
Well said Melissa. After seeing Wicked I too thought of many parallels between autism and this musical. The way Elphaba was treated; mostly because she appeared different (green). Almost no one took the time required to understand her. With the exception of a few government representatives, who is seeking to understand us? Not only together are you unlimited, but your “future is unlimited.” If you ever have the chance to see this musical I recommend you listen to the soundtrack repeatedly before seeing the show. After you see the show then tell me if some of the lyrics from the songs “Popular” and “For Good” resonate with you the way they did with me.
Posted by: Kub Marshman | July 26, 2009 at 07:30 AM